Despite what the name implies, rare diseases are not truly rare. It is estimated that between 6% and 8% of the European Union’s population—some 30 to 40 million people—are affected by one of more than 6,000 rare diagnoses. Nearly half of these patients are children. In Croatia, proportionally, up to half a million people could be included in these statistics.
The International Day of Rare Diseases was marked on February 28 in Zagreb at the Grounded Sun sculpture on Bogovićeva Street. To highlight this often-overlooked issue in healthcare, the sculpture was symbolically “wrapped” in a zebra-patterned scarf—the official emblem for rare diseases.
Patients with rare conditions commonly face challenges in the healthcare system—delayed diagnoses, limited information about treatment, and uncertain options for rehabilitation. These obstacles add stress for those affected and their families, particularly children and their primary caregivers.
Participants at the event once again underscored the urgent need to adopt a new National Plan for Rare Diseases, which has already been drafted but remains pending from April 2024 onward.
Zebra stripes – a symbol of rarity
Zebra stripes, the emblem of rare diseases, illustrate the variety of these diagnoses: each disease has distinct features, just as all zebra’s stripes are unique. “We want to emphasize that many patients are invisible to the healthcare system. We need to recognize them, register them, and provide the appropriate treatment,” speakers at the event stated. They also noted that 75% of rare diseases affect children and that 30% of those children do not reach the age of five.
Contrary to common perception, rare diseases are not exotic outliers that only occur elsewhere; they can, unfortunately, affect anyone, anywhere. Far from being isolated cases, these conditions affect some of society’s most vulnerable individuals, who deserve full access to healthcare and social support. Whether the National Plan will be adopted this year or delayed yet again remains a crucial question. For patients and families, any postponement means an even tougher battle against already complex diagnoses.
